The Hidden Blog

April 23 2016

After a few years I decided it is time.  Everyone else is doing it, why not me.  After a few years of feeling alone I decided it is time.  Nobody really seems to understand or know how we feel, why not share it.  After a few years of talking and learning about PKD, transplants, dialysis and more I decided it is time.  Why not start blogging or venting about what is happening in our lives.  All the cool kids in their 20’s are doing it.  Why not us?

Oh yea.  That is right.  We are approaching 40.  Oh well.

Today might be my last time I will sit in silence and think about things I want to say, share or ask.  Today as I sit in the ‘Infusion Suite’ watching my amazing husband receiving a saline infusion, I realize how crazy life is.  Maybe the humor that comes out of our mouths someday as we sit in these appointments, go to various treatment locations, etc will help someone.  Or just make us someday look back at this blog and laugh.

I guess enough of being a smart aleck and thinking out loud.  I should probably back up a few steps and share more.

My husband is in stage 5 kidney failure…wow that is a lot of heavy when you type it out that way….

My husband is in stage 5 renal failure…much better.  He has Polycystic Kidney Disease, or PKD.  He evidently has had it his entire life, but we can talk more about that another blog.  That is a vent or rant for another time.

He has been on the waitlist for a kidney for just over a year now.  The wait is real.  You hear stories about people all the time receiving a kidney from someone in a few months, or waiting for a deceased donor and it happening in a matter of a few days.  Those stories are horse shit.  Don’t believe a single thing they say about it happening so quickly.  Totally not true.  Plus, it is SO much more complicated than that.

Today is our most recent adventure.  The adventures we had envisioned when we started dating a few years ago and married 6 months ago are very different than what is taking place today.  Those adventures in a woman’s mind involved disposing of all evidence of an ex wife and live in girlfriend, hiking hidden beautiful trails in the Smokies, planting flowers that would bloom over our lifetime together, or maybe even driving the salt flats in Bonneville.  Little stuff ya know.

Today’s adventure is all about this gamble to help make my hubs feel better.  Last Thursday we met with the doctor and determined dialysis was our next step since the doc won’t take our black market kidney.  Today I hope this infusion will delay dialysis more so Shannon can meet his summer goal of making it through September without a port.

The biggest question about this transfusion – is it a placebo ?  Is it a placebo to try help the hubs feel better?  A complicated plan from insurance companies?  I hope it works no matter what the ploy is.  Hoping and praying like always.  Hope and praying for some type of relief for his pain.


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